Patient Advocacy LinksAmerican Skin Association Inc. 345 Park Ave. South 4th Floor New York, NY 10010 800-499-SKIN [email protected] www.skinassn.org Coalition of Skin Diseases P.O. Box 114 Mascoutah, IL 62258 618-566-2020 [email protected] Coalition of Patient Advocates 6600 S.W. 92nd Ave Suite 300 Portland, OR 97223 Tel: 503-244-7404 FAX: 503-245-0626 AIDS AIDS Hotline Tel: 800-243-AIDS (Illinois Only) Gay Men's Health Crisis 129 West 20th St New York, NY 10011 Tel: 212-807-6655 HIV Testing & Counseling - STD Clinic Howard Brown Memorial Clinic 945 West George Chicago, IL 60657 Contact: Social Services Dept Tel: 312-871-5777 Albinism National Foundation for Vitiligo & Pigment Disorders 9032 South Normandy Dr Centerville, OH 45459 Tel: 513-885-5739 National Organization for Albinism and Hypopigmentation (NOAH) 1530 Locust St Box 29 Philadelphia, PA 19102-4415 Tel: 215-545-2322 Tel: 800-473-2310 Answered 24 hrs E-mail: [email protected] WWW: http://www.albinism.org Alopecia Areata National Alopecia Areata Foundation 14 Mitchell Blvd. San Rafael, CA 94903 Tel: 415-472-3780 [email protected] www.naaf.org Ataxia National Ataxia Foundation 2600 Fernbrook Lane, Suite 119 Minneapolis, MN 55447 Contact: Donna Gruetzmacher Tel: 763-553-0020 FAX:763-553-0167 e-mail: [email protected] WWW: http://www.ataxia.org Basal Cell Carcinoma Nevus Syndrome/Gorlin's Syndrome BCCNS Life Support Network P.O. Box 321 Burton, OH 44021 440-834-0011 Toll-free 866-834-1895 Fax 440-834-0132 [email protected] www.gorlinsyndrome.org Behcet's Syndrome American Behcet's Foundation, Inc. P.O. Box 54063 Minneapolis, MN 55454-0063 Tel: 800-723-4238 Tel: 800-7BEHCETS WWW: http://www.behcets.com Cancer American Cancer Society 1599 Clifton Rd, NE Atlanta, GA 30329 Tel: 800-227-2345 Tel: 404-320-3333 FAX: 404-325-2217 WWW: http://www.cancer.org Cutaneous T-Cell Lymphoma - Mycosis Fungoides Mycosis Fungoides Foundation P.O. Box 374 Birmingham, MI 48012 248-644-9017 [email protected] www.mffoundation.org CTCL-MF E-Mail Support List To subscribe, send E-mail to: [email protected] In body of the message write: Subscribe CTCL-MF (Owned - founded by: Judy Jones [email protected]) Dermatitis Herpetiformis American Celiac Society 58 Musano Ct West Orange, NJ 07052 Tel: 201-325-8837 Celiac Disease Foundation 13251 Ventura Blvd, Number 3 Studio City, CA 91604-1838 Tel: 402-558-0600 Celiac Sprue Association/USA P.O. Box 31700 Omaha, NE 68131 Contact person: Leon H. Rothmann Tel: 402-558-0600 FAX: 402-558-1347 Gluten Intolerance Group (Dermatitis Herpetiformis) 14110 10 Ave SW Suite A Seattle, WA 98166-1820 Contact: Cynthia Kupper, CRD Tel: 206-246-6652 Fax: 206-246-6531 [email protected] WWW: http://www.gluten.net Dermatomyositis Myositis Association of America 755 Cantrell Ave, Suite C Harrisonburg, VA 22801 Tel: (540) 433-7686 FAX: (540) 432-0206 E-mail: [email protected] WWW: http://www.myositis.org Dystrophic Epidermolysis Bullosa DEBRA of America 5 West 36th St. Suite 404 New York, NY 10018 212-868-1573 [email protected] www.debra.org Ectodermal Dysplasia National Foundation for Ectodermal Dysplasia P.O. Box 114 Mascoutah, IL 62258 Contact: Mary Kaye Richter Tel: 618-566-2020 FAX: 618-566-4718 [email protected] WWW: http://www.nfed.org Eczema National Eczema Association for Science and Education 4460 Redwood Hwy. Suite 16D San Rafael, CA 94903 800-818-7546 [email protected] www.nationalexczema.org Ehlers-Danlos Syndrome Ehlers-Danlos Syndrome Foundation 6399 Wilshire Blvd., Ste. 200 Los Angeles, CA 90048 Tel: 323-651-3038 e-mail: [email protected] WWW: http://www.ednf.org/ Epidermolysis Bullosa Dystrophic Epidermolysis Bullosa Research Association of America (D.E.B.R.A. of America, Inc.) 141 Fifth Ave New York, NY 10010 Contact: Miriam Feder Tel: 212-995-2220 Genetic Disease The Alliance of Genetics Support Groups 4301 Connecticut Ave, NW, Suite 404 Washington, DC 20008-2304 Tel: 202-966-5557 Helpline: 800-336-GENE (4363) FAX: 202-966-8553 e-mail: [email protected] WWW: http://www.geneticalliance.org/ Hemochromatosis Hemochromatosis Research Foundation P.O. Box 8569 Albany, NY 12208 Contact: Margit Krikker, MD Tel: 518-489-0972 FAX: 518-489-0227 Herpes Herpes Resource Center American Social Health Association P.O. Box 13827 Research Triangle Park, NC 27709 Tel: 919 -361-8488 (Questions) Tel: 800 -230-6039 (Orders) WWW: http://www.ashastd.org/hrc/ Histiocytosis Histiocytosis Association of America, Inc. 609 New York Rd Glassboro, NJ 08028 Tel: 609-881-4911 Human Papillomavirus HPV Support Program American Social Health Association P.O. Box 13827 Research Triangle Park, NC 27709 Tel: 800-227-8922 Ichthyosis Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) 650 N. Cannon Ave, Suite 17 Landsdale, PA 19446 Tel: 800-545-3286 Fax: 215-631-1413 e-mail: [email protected] WWW: http://www.scalyskin.org Incontinentia Pigmenti National Inconitentia Pigmenti Foundation 41 East 57th St, 5th floor New York, NY 10022 Contact: Susanne B. Emmerich Tel: 212-207-4636 Fax: 212-371-7345 e-mail: [email protected] WWW: http://imgen.bcm.tmc.edu/IPIF Klippel-Trenaunay Klippel-Trenaunay Support Group KT Syndrome Contact: Judy Vessey 5404 Dundee Rd Edina, MN 55436 Tel: 612-925-2596 FAX: 612-925-4708 e-mail: [email protected] WWW: http://www.k-t.org Leprosy (Hansen's Disease) World Health Organization Action Programme for the Elimination of Leprosy 20 Avenue Appia CH-1211 Geneve 27 Suisse (Switzerland) Tel: 41 22 791 39 19 or 41 22 791 32 80 FAX: 41 22 791 48 50 e-mail: [email protected] WWW: http://www.who.int/lep Damien Dutton Society for Leprosy Aid 616 Bedford Ave Bellmore, NY 11710 Contact: Howard Crouch Tel: 516-221-5929 Lupus Erythematosus American Lupus Society 260 Maple Ct, Suite 123 Ventura, CA 93003 Tel: 800-331-1802 FAX: 805-339-0467 Lupus Foundation of America, Inc. 1300 Piccard Dr. Suite 200 Rockville, MD 20850-3226 Tel: 800-558-0121 [email protected] www.lupus.org Marfan's Syndrome National Marfan Foundation 22 Manhasset Ave. Port Washington, NY 11050 800-862-7326 FAX: 516-883-8712 [email protected] www.marfan.org Mastocytosis The Mastocytosis Society, Inc. 11208 Vienna Dr Denton, MD 21629 WWW: http://www.mastocytosis.com Melanoma American Melanoma Foundation USC/Norris Cancer Center 2025 Zonal Ave GH-10-442 Los Angeles, CA 90033-1034 Tel: 213-226-6352 FAX: 213-224-6925 Melanoma Foundation 750 Menlo Ave Suite 250 Menlo Park, CA 94025 Contact: Marsden S. Bloise, MD Neurofibromatosis National Neurofibromatosis Foundation 95 Pine St - 16th Floor New York, NY 10005 Contact: Peter R.W. Bellerman Tel: 212-344-NNFF/6633 or 800-323-7938 FAX: 212 747-0004 E-mail: [email protected] WWW: http://nf.org Nevi Nevus Network Congenital Nevus Support Group P.O. Box 1981 Woodbridge , VA 22192 Tel: (703) 492-0253 E-mail: [email protected] WWW: http://www.nevusnetwork.org Nevus Outreach, Inc. 600 S. Delaware Ave. Suite 200 Bartlesville, OK 74003 Tel: (918) 331-0595 E-mail: [email protected] WWW: http://www.nevus.org Pediculosis National Pediculosis Association P.O. Box 149 Newton, MA 02161 Contact: Deborah Altschuler, Director Tel: 617-449-6487 Pemphigus and Pemphigoid Internationall Pemphigus Foundation 828 San Pablo Ave. Suite 210 Albany, CA 94706 Tel: 510-527-4970 FAX: 510-527-8497 e-mail: [email protected] WWW: http://www.pemphigus.org The Pemphigus and Pemphigoid Society 15934 Hesperian Blvd #122 San Lorenzo, CA 94580 Tel: 510-755-4266 WWW: http://www.1clever.org Porphyria American Porphyria Foundation P.O. Box 22712 Houston, TX 77227 Contact: Desiree Lyon, Director Tel:713-266-9617 Fax: 713-871-1788 WWW: http://www.porphyriafoundation.com Port Wine Stain National Congenital Port Wine Stain Foundation 123 East 63rd St New York, NY 10021 Tel: 516-867-5137 FAX: 516-869-1278 Pseudoxanthoma Elasticum (PXE) National Association for Pseudoxanthoma Elasticum, Inc. (NAPE) 1420 Ogden St Denver, CO 80218-1910 Tel: 303 832-5055 FAX: 806 743-1603 E-Mail: [email protected] PXE International, Inc. 4301 Connecticut Ave., N.W. Suite 404 Washington, DC 20008 Tel: 781-784-3817 FAX: 781-784-6672 E-Mail: [email protected] WWW: http://www.pxe.org Psoriasis National Psoriasis Foundation 6600 S.W. 92nd, Suite 300 Portland, OR 97223 800-723-9166 Fax: 503-245-0626 e-mail: [email protected] WWW: http://www.psoriasis.org Rosacea National Rosacea Society 800 South Northwest Highway Suite 200 Barrington, IL 60010 Contact: Suzanne Corr Tel: 847-382-8971 FAX: 847-382-5567 e-mail: [email protected] WWW: http://www.rosacea.org Sarcoidosis Sarcoidosis Family Aid & Medical Research Foundation 460 Central Ave East Orange, NJ 07018 Contact: Geneva Ausley, President & Founder Tel: 201-399-3644 or 800-203-6429 Scabies -- See Pediculosis Scleroderma Scleroderma Federation, Inc. Peabody Office Bldg One Newbury Peabody, MA 01960 Contact: Jackie MaGoon, Director Contact: Marte Coyle - President Tel: 508-535-6600 FAX: 508-535-6696 e-mail: [email protected] WWW: http://www.scleroderma.org Scleroderma Foundation of Greater Chicago 175 West Jackson Room 917 Chicago, IL 60604 Contact: Pat Straessle, Patient Services Tel: 312-922-3532 Scleroderma Society 1725 York Ave Suite 29-F New York, NY 10128 Contact: Mark Flagan, PhD., President Tel: 212-427-7040 United Scleroderma Foundation 12 Kent Way Suite 101 Byfield, MA 01922 800-722-HOPE (4673) FAX: 408-728-3328 [email protected] WWW: http://www.scleroderma.com Sjogren's Syndrome National Sjögren Syndrome Association 21630 N. 19th Ave Phoenix, AZ 85027 1-800-395-6772 FAX: 602-516-0111 Sjögren's Syndrome Foundation, Inc. 8120 Woodmont Ave Suite 530 Bethesda, MD 20814 301-718-0300 [email protected] WWW: http://www.sjogrens.com Skin Cancer Skin Cancer Foundation 245 Fifth Ave Suite 2402 New York, NY 10016 Contact: Mitzi Moulds Tel: 212-725-5176 Nevoid Basal Cell Carcinoma Syndrome Support Network 162 Clover Hill St. Marlboro, MA 01752 Contact: Susan A. Charron Tel: 508-485-4873 Tel: 800-815-4447 FAX: 213-244-6925 E-mail: [email protected] Sturge-Weber Syndrome Sturge-Weber Foundation (SWF) P. O. Box 418 Mt. Freedom, NJ 07970 Tel: 800-627-5482 E-mail: [email protected] www.sturge-weber.com Tuberous Sclerosis Tuberous Sclerosis Alliance 801 Roeder Rd. Suite 750 Silver Srpirngs, MD 20910 800-225-6872 [email protected] www.tsalliance.org Vitiligo National Foundation for Vitiligo & Pigment Disorders 9032 South Normandy Dr. Centerville, OH 45459 Tel: 513-885-5739 National Organization for Albinism and Hypopigmentation 1530 Locust St. Box 29 Philadelphia, PA 19102 Tel: 800-473-2310 National Vitiligo Foundation, Inc. Box 6337 Tyler, TX 75711 Contact: Allen C. Locklin, President Cheryl McInnis, Director Tel: 903-534-2925 FAX: 903-534-8075 e-mail: [email protected] WWW: http://www.nvfi.org Vascular Anomalies National Organization of Vascular Anomalies NOVA PO Box 0358 Findlay, OH 45840 Contact: Karla Hall, Executive Director 419-425-1593 (fax or phone) email: [email protected] WWW: www.novanews.org Xeroderma Pigmentosum Xeroderma Pigmentosum Society P.O. Box 4759 Poughkeepsie, N.Y. 12602 Tel: 518-851-2612 e-mail: [email protected] WWW: http://www.xps.org |